Speaking of Holland...

Well for those who do not have our carepage information or do not have the details about Parker's heart - here is the quick catch up:

Parker was born with Transposition of the Great Arteries (his pulmonary artery and aorta were switched leaving him with two separate circuits - one side of his heart was receiving blood from the lungs and sending it back to the lungs and the other side was receving blood from the body and seding it back to the body - so he was sending unoxygenated blood to his body)
He had the Arterial Switch Operation when he was 3 days old to switch the arteries. He was home 15 days later.
Here is the new stuff:

At his last echo (in Feb) they found mild pulmonary stenosis (that is, narrowing in his pulmonary artery). At todays echo, they found that it is now severe. A normal gradient for that artery is 40 and his is 70. What that means for his heart is that the right side of his heart is working very hard to squeeze blood through that narrowing to get blood to the lungs. The pressure in the right side of the heart should be around 20. His is 80. That means the left side of his heart is working to push blood to his lungs as hard as the right side is working to push blood to the whole body.
In the echo, it looked like the stenosis was at the valve. If that is the case, he can have a catheter procedure where they would go through the leg into the artery and inflate a balloon to widen the artery.
If the stenosis is higher up, they may have to put in a stent (which would have to replace throughout his life as they do not grow)which will hold the artery open. They can also do this in the lab, but it is riskier and is not fixing the problem.
Worst case, and I'm not sure what would require this, is another open heart surgery.

Needless to say - I am pretty shaken up. I'm frustrated all over the place because I'm not sure how his heart could be functioning like this and I not know it. I feel like I have the responsibility to know that stuff. He's not tired, he's not sweaty, he's not blue or swollen. He's crawling all over the place, taking toys, giving kisses, demanding food, he's a big nutty nut. I always knew this was a possibility so I can't say that I'm shocked like I was the last time - but, as a friend of mine who has gone through this same thing put it, I feel derailed. I felt like we were on the "healthy" tracks because he was doing so well and actually we are not. We are on the "out of my control again" tracks and I hate that place.

I have spoken with a good friend who went through this same thing wtih her son when he was Parker's age and received some wonderful advice about things that I can be in control of: what information I let into my head, what doctor I am working with, and how I view the problem. I am trying VERY hard to have faith that this is ok and to come to terms with the fact that this is our life.
I was starting to get the feeling that when they said Parker's heart was "fixed" they meant that it was perfect. And that's not what they said. Parker's TGA is fixed, compeltely, and that is amazing - but in doing that, little problems will inevitably come up for him. It is not perfect. And that's ok. This is not the end of the world. This is not the worst thing we have been through.
I think the problem is not that I am worried, although I am, but it is the knowledge that there will always be something to worry about. All I have to do is get on board with that, and try to worry peacefully and not let it get in the way of the days that ARE perfect. I can worry when I need to and praise God when I don't.